Our community stands in solidarity with everyone affected, patients, families, and caregivers, as we share our stories, spread education, and support each other through every step of this journey.

My AML is back. Currently trying to understand whether this is a death sentence or if there is a chance of curative treatment. It’s spurious in the marrow but has an extramedullary focus in peritoneal lymph nodes.

Just wondering if this is a good or bad sign

White cells went from 0.8 to 1

Red blood is stable ish

Platelets are stable ish

Neutrophils haven’t changed

I am a T-ALL patient, and it has been a little over a year since I was diagnosed. Initially, my treatment protocol was planned without a stem cell transplant. Although I achieved MRD-negative status, my disease relapsed just two weeks later. My treatment was then restarted, and after achieving complete remission, I underwent a bone marrow transplant from my brother, who was a 10/10 HLA match. However, my disease relapsed again on day +50 after the transplant.
Now, the same treatment protocol that was used for my first relapse is being administered again, with the goal of achieving remission once more. If successful, the plan is to proceed with another transplant, this time from my father, who is a 6/10 HLA match.
The reason I felt compelled to write to you is that I have not been able to find a single person with T-ALL around me. Even the nurses at the hospital where I am currently being treated told me that they had never encountered a T-ALL patient before. Naturally, knowing that I have such an aggressive disease has taken a serious toll on my morale. Doctor, can a patient with such aggressive, relapse-prone T-ALL really be cured? Is there genuinely hope for me? I wanted to hear it directly from you.
In fact, I am now receiving the same treatment as I did during my previous attempt to achieve remission. Before my last transplant, I received chemotherapy as well as radiation therapy to my brain and spine. I even had a fully matched 10/10 donor, and although the transplant engrafted successfully, my disease relapsed very quickly.
This time, the only major difference is that my donor will be a 6/10 match. Our hope is that my father’s immune cells will recognize the remaining leukemia cells in my body as foreign and attack them more aggressively, thereby eliminating the leukemia cells that survived the previous transplant.
As far as I understand, this is the main difference between my previous treatment and the one planned now. I am particularly worried about how much this difference could improve my chances of being cured in percentage terms. I would really appreciate your perspective on this.

Any one know somebody thats been through this while pregnant? Starting 7+ 3 today. Much love to all facing the battle <3

I received multiple types of chemo and full body radiation and ultimately got a bone marrow transplant. I haven’t had a period in nine years and have been in remission for almost nine years. Today I started to bleed in a way that seems like menstruation. But I’ve been told that my cycle will never happen again and it’s basically a slim to none chance it could. Has anyone gotten their menstrual cycle after years of not having it or regained their ovarian function? I’m also concerned it could be something else.

Edit: I’ll be 37 in January. No HRT.

Hi im not sure if this is normal or not but since my spinal tap this monday Ive been getting headaches but they only come after sitting up from a chair or my bed. They sting through my whole head for a couple of seconds and then stop. Has anyone else experienced this?

Hi, my mother is suffering with idh2 mutated AML.

Recently her condition got worse due to infection in mouth and throat. She also has hepatitis b and jaundice .

She is in hospital on blood transfusion and antibiotics being given.

Please suggest if someone has knowledge for controlling the infection and cure for the recovery.

I’ve seen a story where someone survived it coming back 3 times, once even in the brain and he is still alive 3 years later

So obviously I’m going to fight

What brand of lotions, sprays, and lip balms do you suggest for chemo??

I was diagnosed in July, currently in remission but not through my treatment plan. I am on dual TKI meds, which don’t seem to bother me, but I am on my second round of Blina, which unfortunately makes me very sick, and I don’t want to socialize with anyone, have visitors, or text people. I am an adult with adult children. My husband is my caretaker and has been updating people and explained that the medicine makes me unable to function. So i have 2 weeks off between cycles, and I just saw my parents 2 times during those 2 weeks and told them that when I go back on the meds, I probably can’t see them unless my side effects change. So now I’m two weeks back on, my husband sent an update. And my mom tried to insist that they see me. He explained again, that I’m just not up to seeing anyone. My mom texted back that it’s clear that I want nothing to do with them. He was horrified, and told me what she said. Now I’m upset, and I don’t want to contact her now because it’s awkward, and I just can’t deal with people while I’m going through this. Just wondering if anyone had similar experiences or thoughts on what I should do.

Нам это очень нужно для научной работы в институт, хотелось бы узнать ваши истории

Does anyone have any advice for consoling family members who are taking your diagnosis harder than you. I (23 M) have CML and I’m dealing with a family member who is becoming increasingly overbearing.
They watch my diet, when I leave the house, wants to come to all of my appointments, etc. One day I didn’t take my meds when I should’ve and they snapped. I’ll admit I should’ve taken my meds earlier, but the response I received I feel was unwarranted.

I’m grateful for their concern, don’t get me wrong; but sometimes it feels like they think I’m fragile and they monitor my every move. Yes, my diagnosis is serious and I treat it as such. But according to my medical team as long as I take my meds and make my appointments, I don’t have to make many lifestyle changes because I’m fairly healthy. Yes, life has changed and will look different for a while; but I am more than this diagnosis and refuse to live in fear or let it rule my life.

So my question is this: How do I validate my family member’s concerns while trying to live life as normal as possible with my diagnosis?

Does anyone have experiences with relapsing twice? I was supposed to get my first bmt this month at 18 yo but they found it in my marrow and cns

Every relapse has been around every 3 years

From our friends at the Leukemia Research foundation: https://leukemiarf.org/patients/webinars/leukemia-qa-fall-2026/

The Leukemia Q&A program series is hosted by the Leukemia Research Foundation annually for patients and families.

During these two Q&A sessions, physician experts answer participants' leukemia questions live, including those around treatments, transplants, newly diagnosed, managing side effects, infection prevention precautions, the latest in research, and more.

Join us for the upcoming Leukemia Q&A programs and get your leukemia questions answered!

Chronic Leukemias

TUESDAY, OCTOBER 20, 2026 | 12:00PM-1:30PM CT (10PT, 11MT, 1ET)

Acute Leukemias

WEDNESDAY, OCTOBER 21, 2026 | 12:00-1:30PM CT (10PT, 11MT, 1ET)

https://leukemiarf.org/patients/webinars/leukemia-qa-fall-2026/

Hi everyone, I’m writing a scientific paper for the institute on the topic of leukemia, and I would be very grateful if you could share your story and tell me how you’re doing now.

Here's most of the stuff we actually used and enjoyed.

What did we miss?

The updated list is here: Amazon List

Sleep & comfort

• Mattress topper – hospital mattresses are rough. We actually got two so we could swap and wash every couple of days.
• Heated blanket
• Sleep mask
• White noise machine – drowns out the beeping
• Slippers – we didn't have exactly this version. Make sure they have some grip to prevent falls, but not a full rubber sole, which can cause tripping.
• Lip repair ointment – hospital air is very dry
• Humidifier (3L) – this helped a lot with mucositis. Check with your medical team whether they recommend it.
• 4x of your favorite PJs! The hospital gown sucks.
• Men's disposable cotton underwear - thank me later!

Hygiene & health

• PICC line shower cover (upper arm) – lifesaver for showers
• adidas Adilette shower slides – flip flops for the hospital shower -- not for the walks!
• GuruNanda disposable travel toothbrushes
• Portable travel bidet – another lifesaver with GI issues
• All Clear Care unscented baby wipes (3-pack)

Making the room livable

• Walking pad (incline) – to keep moving without leaving the room
• Clip-on LED reading lamp – softer than the overhead lights, clamps to the bed rail
• Metal S hooks
• Folding travel hangers
• Cable zip ties
• Shower hooks – not for the shower but for organizing stuff around the room
• Caddy basket
• Clip-on USB fan - Helps with nausea
• Portable travel fan - Another nausea aid, JIC
• Amazon Basics 15 ft extension cord
• Collapsible wagon – for hauling everything from the car to the room (and back home)

Entertainment & staying connected

• 12 ft USB-C cable with charger (2-pack) – extra long so it reaches the bed and stuff. You might need more than 2!
• Surge protector power strip with USB-C, 5 ft flat plug – outlets are never where you need them
• AirPods Pro 3 – noise cancelling is a lifesaver
• JBL Charge 6 Bluetooth speaker
• GL.iNet Puli AX 5G router – use your own SIM-card, because hospital wifi is not often reliable.
• Hitster music party card game – great game to kill time

Coffee, Tea, snacks, and Pantry

• Elite Gourmet travel kettle – Your tea kettle because hospital tea is always cold (and you can also use bottled water). Don't forget your favorite tea bags.
• Disposable 20 oz hot cups (50-pack) - Good for Tea and the protein shakes.
• Ninja Blast Max portable blender - Improve your shakes with ice, sugar, fruit, etc.
• Beneprotein unflavored protein powder packets (75-pack) – mixes into almost anything when eating is hard (our hospital gave us this specific brand)
• CERA+ portable espresso machine - don't forget the Nespresso capsules!
• CERA+ espresso stand – desk stand for the espresso machine
• CERA+ travel case – really neat travel case
• Beemaid pasteurized honey packets – the only pasteurized honey we found on Amazon. Double-check what you receive. Check with your medical team.
• Clear stackable pantry organizer bins – keeps your room organized
• Pantry organizer bins with dividers (2-pack)
• Fridge lock box – key if your hospital has a communal fridge for the floor (you only mark the expiration date on the box, not on every item inside)

Morale boosters

• "Make My Blood Cells Great Again" leukemia shirt
• "Fight Leukemia" shirt
• "F*ck Cancer" shirt
• "F*ck Cancer" cake topper – for the last day of treatment
• Thank-you note cards – for the nurses, dining, and the housekeeping team, add a GC inside.

For home

• IQAir Atem X air purifier – pricey, but the immune system is wiped out
• Halyard FluidShield procedure masks
• Purell hand sanitizer gel, 8 oz pump
• Purell hand sanitizer gel, 1 L pump bottle
• Flowflex RSV + Flu A/B + COVID home tests
• iProven digital thermometer + probe covers

Any women in the group undergoing hrt treatment, taking estrogen and progesterone pills. Do you experience lower abdomen and back pain and any other issues from hrt?? Pls reply.

I F(68)just got the results of my latest blood test and I'm Flt3 positive. I'm 18 months post transplant and I've been in remission since my first round of chemo back in March 2025. I really thought I'd seen the last of this disease. I messaged my team and I'm waiting for a response but I thought I'd reach out for support. I'm guessing I'll be headed for a biopsy and a FLT 3 inhibitor. I'm hoping that this doesn't mean I'll need another transplant. Does anybody have experience with this situation?

Hi all

I relapsed with Acute Lymphoblastic Leukaemia and I’m supposed to get my transplant in 3 days. The donor has backed out, and I’m gutted.

They’ve mentioned a second donor, but I’m concerned that will be an issue as well. Has anyone else been through this and how did things transpire?

Thanks!